Our Life is…

Oh, our Josie girl! Such a complicated bundle of joy. She’s doing really well right now. She’s walking well and starting to talk (she says: bye, hi, cat, up, and heeeeey- like Fonzi), and she signs like crazy! I can’t believe how many signs she knows and uses, it is so cool. I highly recommend signing with babies! Anyway, on to the complicated stuff!

Heart: All seems well on the heart front, thankfully. She is due for an echo, EKG, and cardiologist visit next month and we hope everything will still look perfect. I get nervous every time. I wish I knew how to read echos every time I sit at her bedside in the dark, staring at that screen. I watch her differently because of the what-ifs, because of what was missed before. The other day I asked Josh to watch a video I took of her because it looked like she was belly-breathing and retracting, but we think it was just silliness and playing. There is always a question and a doubt, but we are very thankful that right now, all seems to be well!

Airway: She still definitely has laryngomalacia (floppy airway) and just had a run-in with croup a few weeks back. It went from a little fevery viral nothing that we thought she was over, to barking/can’t breathe in the middle of the night. I had a brief moment where I thought we’d need to take her to the ER, but then she caught her breath and I was able to listen to her lungs and check her sats with K’s pulse oximeter. Sometimes I don’t know how “normal” parents handle these things! We saw the pediatrician who started her on steroids, which led to a rash which we initially though was a prednisone allergy (practically unheard of), but it continued after stopping the prednisone and got pretty gnarly. Anyway, the good news is she ISN’T allergic to prednisone because due to her laryngomalacia, she will probably be dealing with stridor during any old respiratory infection and we need to be able to use it when she’s struggling! She also had some standard fare wheezing during this illness and needed a breathing treatment. Worked like magic! Hooray for simple solutions.

Growth: At last check, she was doing great here! She’s still on formula and gets the bulk of her nutrition from that, and we only feed her high calorie purees (greater/equal to than the calories in formula) and add flax oil for a calorie boost/constipation treatment, but her growth chart looks so pretty!

Food Allergies: Aside from the constant underlying stress and the challenges of cooking food that we like AND that keeps Josie safe, things are good on this front. No reactions since we figured out her allergens, aside from some eczema flares we can’t quite figure out. She is off wheat/gluten due to eczema and constipation issues, has life-threatening food allergies to eggs, dairy, nuts, and is seriously allergic to dogs and has to avoid all furry friends. We finally had to take our dogs to the SPCA last week. I don’t really want to think or talk about it, but they couldn’t keep living here the way they were and we couldn’t keep holding out hope someone would come along and magically take them from us. So, it’s done and we’re moving forward. Allergy life is hard. The stakes are high every day. If you’d like a glimpse into why, read this post written by a fellow allergy mom.

Swallowing: I mentioned this before, briefly, but we had some concerns that Josie was having swallowing issues due to frequent coughing spells during/after eating, as well as gagging. Well, we had her swallow study done and her swallowing is fine! However, she definitely has some oral-motor issues that are causing the signs we were observing. We got this cool video at the study!

The swallow study led to a speech/feeding therapy evaluation that confirmed she needs therapy. She isn’t latching well to her bottles, she stuffs unsafe amounts of food in her mouth, she isn’t manipulating food well, she shows signs of decreased oral sensation/awareness, and the kicker is that it looks like she has both a lip and tongue tie complicating things. That was really a gut-puncher for me, which seems silly in the scheme of ALL the things she has going on, but back in her earliest days when she was “just” a healthy baby struggling to latch and gain weight, I thought it might be an issue. I even asked about it, but it kind of fell by the wayside and shortly after, her heart condition was diagnosed and it ceased to be a concern. She had multiple therapists watch her eat on multiple occasions in the hospital and nobody caught it. I just HATE to think that the poor kid was fighting against a heart defect, heart failure, undiagnosed food allergies and subsequent gut-damage, oral-motor issues, AND a physical impediment like lip/tongue tie that was fixable and we missed it. Everyone missed it. That’s the gut-puncher, that she fought harder than she had to when she was fighting against more than enough already. And somehow, she did it. She ate. She grew. She healed. She survived! She’s surviving every day. She certainly is a wonder. ♥